Patient-reported outcome measures for life participation in peritoneal dialysis: a systematic review

Karine E Manera; Angela Ju; Amanda Baumgart; Elyssa Hannan; Wenjing Qiao; Martin Howell; Melissa Nataatmadja; Martin Wilkie; Fiona Loud; Daniel Schwartz; Helen Hurst; Sarbjit Vanita Jassal; Ana Figueiredo; Rajnish Mehrotra; Jenny Shen; Rachael L Morton; Thyago Moraes; Rachael Walker; Catherine Cheung; Janine F Farragher; Jonathan Craig; David W Johnson; Allison Tong

doi:10.1093/ndt/gfaa244

Patient-reported outcome measures for life participation in peritoneal dialysis: a systematic review

Nephrol Dial Transplant. 2021 Apr 26;36(5):890-901. doi: 10.1093/ndt/gfaa244.

Authors

Karine E Manera^{1

2}, Angela Ju^{1

2}, Amanda Baumgart^{1

2}, Elyssa Hannan², Wenjing Qiao², Martin Howell^{1

2}, Melissa Nataatmadja³, Martin Wilkie⁴, Fiona Loud⁵, Daniel Schwartz⁶, Helen Hurst⁷, Sarbjit Vanita Jassal⁸, Ana Figueiredo⁹, Rajnish Mehrotra¹⁰, Jenny Shen¹¹, Rachael L Morton¹², Thyago Moraes¹³, Rachael Walker¹⁴, Catherine Cheung¹⁵, Janine F Farragher¹⁶, Jonathan Craig¹⁷, David W Johnson^{18

19

20}, Allison Tong^{1

2}

Affiliations

¹ Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
² Centre for Kidney Research, Children's Hospital at Westmead, Westmead, NSW, Australia.
³ Sunshine Coast Hospital and Health Service, Sunshine Coast University Hospital, Kawana Waters, QLD, Australia.
⁴ Department of Nephrology, Sheffield Teaching Hospital NHS Foundation Trust, Sheffield, UK.
⁵ Kidney Care UK, Alton, UK.
⁶ Division of Nephrology, Department of Medicine, University of British Columbia, Vancouver, BC, Canada.
⁷ Manchester Academic Health Science Centre, Manchester University NHS Foundation Trust, University of Manchester, Manchester, UK.
⁸ Division of Nephrology, Department of Medicine, University Health Network, University of Toronto, Toronto, ON, Canada.
⁹ School of Science and Life, Nursing School Pontifical Catholic University of Rio Grande do Sul, Porto Alegre, Brazil.
¹⁰ Kidney Research Institute and Harborview Medical Center, Division of Nephrology/Department of Medicine, University of Washington, Seattle, WA, USA.
¹¹ Division of Nephrology and Hypertension, Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center, Torrance, CA, USA.
¹² NHMRC Clinical Trials Centre, University of Sydney, Sydney, NSW, Australia.
¹³ School of Medicine, Pontifícia Universidade Católica do Paraná, Curitiba, Paraná, Brazil.
¹⁴ School of Nursing, Eastern Institute of Technology, Hawke's Bay, New Zealand.
¹⁵ Fraser Health Authority, British Columbia, Canada.
¹⁶ Department of Community Health Sciences, University of Calgary, Calgary, AB, Canada.
¹⁷ College of Medicine and Public Health, Flinders University, Adelaide, SA, Australia.
¹⁸ Department of Nephrology, Princess Alexandra Hospital, Brisbane, QLD, Australia.
¹⁹ Australasian Kidney Trials Network, Centre for Health Services Research, University of Queensland, Brisbane, QLD, Australia.
²⁰ The Centre for Kidney Disease Research, University of Queensland, Brisbane, QLD, Australia.

Abstract

Background: Patients receiving peritoneal dialysis (PD) endure an ongoing regimen of daily fluid exchanges and are at risk of potentially life-threatening complications and debilitating symptoms that can limit their ability to participate in life activities. The aim of the study was to identify the characteristics, content and psychometric properties of measures for life participation used in research in PD.

Methods: We searched MEDLINE, Embase, PsychInfo, the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and the Cochrane Central Register of Controlled Trials from inception to May 2020 for all studies that reported life participation in patients on PD. The characteristics, dimensions of life participation and psychometric properties of these measures were extracted and analyzed.

Results: Of the 301 studies included, 17 (6%) were randomized studies and 284 (94%) were nonrandomized studies. Forty-two different measures were used to assess life participation. Of these, 23 (55%) were used in only one study. Fifteen (36%) measures were specifically designed to assess life participation, while 27 (64%) measures assessed broader constructs, such as quality of life, but included questions on life participation. The 36-Item Short Form Health Survey and Kidney Disease Quality of Life Short Form were the most frequently used measures [122 (41%) and 86 (29%) studies, respectively]. Eight (19%) measures had validation data to support their use in patients on PD.

Conclusions: The many measures currently used to assess life participation in patients receiving PD vary in their characteristics, content and validation. Further work to pilot and validate potential measures is required to establish a core patient-reported outcome measure to assess life participation in patients receiving PD.

Keywords: life participation; outcome measures; peritoneal dialysis.

Publication types

Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't
Systematic Review

MeSH terms

Adult
Humans
Patient Reported Outcome Measures*
Peritoneal Dialysis / adverse effects
Psychometrics
Quality of Life

Grants and funding

K23 DK103972/DK/NIDDK NIH HHS/United States